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

No Prep Vegan Snacks With EarlyBird

Whether you're super busy, tired or sick, you don't always have the time or energy to prepare something to munch between meals. I recently discovered EarlyBird, who have solved my rumbly tummy issues! 

It's easy to grab junk food when you want quick and easy grub, but EarlyBird give you a delicious, healthful alternative. 

EarlyBird is a weekly snack box that delivers 4 healthy vegan snacks plus one tea bag. I've been testing them out for the past few weeks. 

Week One! Everything was so delicious!

Week one's tea. Darjeeling Duck - very nice!

Week two was amazing, the only snack I wasn't crazy about was the Cho-kale-et Chips. The tea was Mojitea Mockingbird - peppermint with lime and lemongrass. The chestnut snack reminded me of Booja-Booja truffles, so yum!

Week three was delicious! I'm definitely enjoying these boxes! The chocolate buttons that feature in the Flat Pack Brownie (and also in Nuts About Ella) are gorgeous - really generously sized, too. The tea was Roy-boss Robin - rooibos tea isn't usually my favourite, but this was divine. 

I really like that each week you get a chia pudding. You just need to add 50ml of water to them, leave it for a few minutes and you get a scrumptious porridge-like snack. I add hot water when I've boiled the kettle for a cuppa. 

I really enjoyed Berry Chia Pud. What a beautiful colour!

Overall I've been really impressed with these boxes, I've been eagerly awaiting their arrival each week! EarlyBird costs £4.99 a week, but I got week one for half price with a code! Bargain! You can get your own half price box using my code emma-9227.

Other snacking favourites of mine lately include - 

Eat Real Quinoa Chips, Sour Cream and Chive flavour, 85p. Guys, these are amazing! They remind me of a tastier version of Quavers. 

Cocoa Libre Milk Chocolate Alternative, £1.99. I love these chocolate bars! So good, so creamy!

I hope I've given you some great snacking ideas, whether you're a spoonie*, short on time, or just have better things to do than making snacks! If you can recommend any quick vegan snacks, let me know in the comments!

Also, you may have noticed I've revamped my blog design and changed the name! What do you think? I love a good makeover!

Til Next Time,

Emma
xXx

This is not a sponsored post, I bought everything with my own money. My opinions can never be bought anyway!

*Spoonie = chronically ill person.

The 'Life' of a Vegan 'Make-up Artist'

I've been putting off making this post for a long time. I wasn't sure what I would write. This blog got abandoned along with my hope, when I realised I couldn't stay in denial any longer - I am far too ill to work. 

When my Nan was alive, she came to live with my parents and I so we could help her with meals and generally look out for her when she was too frail and ill with her asthma. Even as her health declined, she still paid rent on her old house - she was adamant she'd move back in when she was well enough. We'd play along, but we knew she'd never be well enough again. 

Nan was the type of person who loved looking after everyone. Extremely house-proud, every ornament was dusted and facing the right direction, every surface was polished. She'd clean up your crumbs and offer you more while you were still halfway through your food. She'd iron any clean clothes she could get her hands on, socks and knickers included. 

Nan and I, around 1997 I think.

It was hard for her when she had to give up her cleaning job, but harder still was giving up her independence. Being looked after by those she had once bathed and fed, and bounced on her knee. 

I find myself thinking about her now a lot, how I'd underestimated exactly what she went through at the time, as her body began to betray her. I lie in bed day in, day out, having my meals brought to me by my parents, in the same room where she laid and had meals brought to her. 

When she died I was devastated, I loved her fiercely. But at the same time, a small part of me was relieved. I was no longer constantly worrying about her health and well being. I was glad she was no longer suffering, weak and ill and sad, though she smiled for us.

What happened to her in her eighties has happened to me, and I'm still in my twenties. I often wonder if, in the coming months or years I were to die, would my family feel that small sense of relief I felt for Nan all those years ago? ME/CFS is not a terminal illness, but it can certainly take your life from you. I pushed and shoved and forced myself to work for so long, because I simply loved it. I enjoyed my job and it was worth it, even if I had to turn down more jobs than I accepted. Even when I could only manage working two days a month, I cherished those days. 

In the last year, I became unreliable, cancelling jobs at the last minute because I couldn't make it through my routine of bathing and dressing before I had to lie down, weak and exhausted. The jobs I did make it to, I no longer enjoyed, having to focus on staying standing, concentrating on what I was doing while my limbs ached, and every part of my body was begging me to lie down. It was time to admit defeat.

So now I'm no longer a make-up artist, what am I going to do with my life? I have no frikkin clue. Here is a Venn Diagram explaining my dilemma.

That question mark has been plaguing me for a long time. I need a sense of purpose, I need to achieve something tangible. My mental health, which is shaky at best, has definitely taken a hit now that my days are just spent killing time and trying to quell my epic boredom.

What does the future hold for me? For this blog? I'll need to change the name if I'm to continue. The Life of a Vegan Bed-Dweller? 

I guess only time will tell. I have far too much of it these days.

Til Next Time,

Emma
xXx

A Very Late Princess...

You may remember, that on the 12th of May, I posted about fundraising for ME Awareness Day, by dressing up as a princess. Except I didn't actually dress up as a princess that day, as I felt too ill. The thing about having ME, is that you feel 'too ill' an awful lot. My depression has also been worse lately, I seem to have lost all motivation, the past month or so. 

Actual footage from my life.

Me trying to get stuff done.

So, I didn't get around to taking my princess pictures for a while, and I haven't got around to posting them until now. What can I say, I like leaving you in suspense!

Do you want to see my princess pics? Go on, then...

I chose to base my look around how ME makes me feel. Grief, for the life I could've had. Frustration, from having to push through debilitating fatigue in order to do anything. Envy, watching others live their lives, healthy and unencumbered. Basically, I threw a pity party on my face, with make-up. I'm carrying a powder brush to represent my (sometime) job, and a spoon to represent the 'spoon theory' explanation of illness, and me as a 'spoonie'.

Product list!

Face-

Kiss My Face Sunscreen SPF 50 Face Factor

 - I actually forgot I was wearing this, it's why I have a bit of a white cast from the flash on my face and neck - oops!
Illuminare Concealing Extra Coverage Mineral Foundation in Alabaster and Porcelain, as concealer.
Lily Lolo Mineral Foundation in China Doll.
Lunatick Cosmetic Labs Cool Contour Palette in 1 to highlight, and 2 and 3 to contour.

She bravely posted a side profile pic. #schnoz

Eyes
E.L.F Mineral Eyeshadow Primer
Diggy Diggy Hole by Shiro on lid and undereye.
A touch of an acid green shimmer Yaby Shadow on inner corner
A mixture of forest green and brown matte Yaby Shadows on crease and inner socket.
Barry M Black Kohl liner all around eyes, on waterline and tightline.
Brows Smoking by Neve Cosmetics. 

Tears Mystery by Beauty Without Cruelty mixed with acid green shimmer from Yaby and Holographic glitter from OCC. Mixed with E.L.F Mixing medium and a touch of clear OCC Lip Tar.

Mascara - Barry M Lash Vegas
Ardell Demi Wispie Lashes

Lips
Women's Weapons by Shiro Mixed with E.L.F mixing medium and clear OCC lip Tar. Topped with 1 from Lunatick Cosmetic Labs Cool Contour Palette in centre of lips.

What do you think of the look? Hopefully I can raise some money for ME Research UK! I have already raised £40 (yay!) at the time of writing on my JustGiving page, so I should get a bit more now that I've come up with the goods, right? I'm really hoping to get to my goal of £100. If you can, please donate! It's so important, ME research is extremely under funded.
In order to encourage you to donate, I present to you these silly pics from my princess 'shoot'.

Theodore getting on on the fun.

Spoooooooon.

Ballgown & socks, the new fashion trend, because sometimes princesses have cold feet!

Click here to donate, or text CFSM51 £3 to 70070. (Or replace £3 with how much you want to donate.) It really means a lot to me.

It means a lot to kitty, too.

That's all from me for now. I have a couple of posts in the pipeline, so don't be too surprised if you see another post soon!

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